There were so many unknowns, and the doctors were far from encouraging! It didn't help matters that my son (5 months old at the time)was fighting a 104 degree fever and double ear infections. Thank God for family! And thank God for all the people lifting us up in prayer. With so many hard things coming at us at once, we were so thankful Emma Kate embraced the situation so well. Seeing her strength helped us out.
I cried more then than I have in my entire life. Part of the tears were from seeing how the steroids affected my sweet little girl so much. She went from hugging and smiling to hitting and not wanting to be touched, overnight. Despite the behavioral changes on the second day she still did well with the nurses and treatments. Thankfully, by the third day the initial shock to her system had calmed down and she was MUCH better. Needless to say I hugged on her ALL day that day, since she hadn't let us touch her the day before. A 2 year old not wanting to be touched or hugged by a parent is so much harder than you can imagine. Especially when all you want to do is love on them and let them know it's okay.
Right when we got back home my husband and I went to the grocery store as there was NOTHING in the house with low enough sodium for her to eat. We went to the store and found a few things. She is now entirely gluten and dairy free, along with low sodium. When I go to the store and find somthing she can have I get SO excited! This is somthing people always ask about: "how has she done with all the diet changes? That must be hard!" The answer to that is simple. She has done amazing. Never ONE complaint about something she can't have- which is a lot. Pizza used to be her favorite food, given the sodium alone it really isn't an option now. However, we recently found out Mellow Mushroom offers gluten AND dairy free pizza! The sodium is high but we work around it. She was SOOOO excited about this. We also make it for her occasionally at home. Fruit also happens to be one of her most favorite things to eat. I love that she can still have as much of it as she wants! She is so good about the food though and eats SO healthy. She even takes her own crackers to church with no problem. She understands this is somthing we have to do and she has never questioned it. I won't have my girl eating nasty stuff though, or torture her by eating things she can't have. My quest has been to be the most amazing natural cook ever (this is challenging with NO salt). I have found a way though, and we all eat the way she does, unless she is not with us.
She is now 3 1/2 years old, and every morning she'll run into the bathroom and shout "mom, I'm going in the little blue potty!" (I have her pee in a little training potty so it's easy to test). Then she stands and waits as I test her urine for protein and says "is it negative, is it negative??!" I'll say yes it is! And she runs happily into the kitchen to pick out her breakfast. I pray everyday the nephrotic syndrome will not return, and if it does that God will guide me in treating it naturally without having to go back on prednisone and zantac (has to take zantac too bc the pred causes ulcers and bad reflux). I don't want her to ever be able to question if I did enough to help her through this and be healthy. She inspires me daily to keep digging, searching, praying for ways to get through this thing and beat it. I am not a quiter, and I hope to teach her the same.
I forgot to mention how much she adores her little brother :)
Swollen From the Protein Spilling: